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Thursday, May 3, 2012 5:56 PM | CCSVI in MS Toronto Volg link

M-361 — May 2, 2012 — Ms. Duncan (Etobicoke North) — That, in the opinion of the House, the government should recognize that: (a) the International Union of Phlebology classifies chronic cerebrospinal venous insufficiency (CCSVI) as a congenital venous malformation; (b) 30,000 individuals have been treated for CCSVI in 60 countries; (c) there is a preponderance of positive CCSVI studies using multi-modal imaging to determine diagnosis; (d) there have been three major safety studies of the CCSVI procedure involving over 1,000 patients; (e) venous angioplasty is routinely used to treat such conditions as Budd-Chiari disease (hepatic vein), May-Thurner syndrome (iliac vein), and renal veins in dialysis patients; (f) there are three FDA-approved Phase II clinical trials underway in the United States; (g) the National Institute for Health and Clinical Excellence in the United Kingdom is calling for “robust controlled clinical trials”; and (h) many reputable American and Canadian physicians/researchers support adaptive Phase II/III clinical trials for CCSVI in Canada.

 

 

M-362 — May 2, 2012 — Ms. Duncan (Etobicoke North) — That, in the opinion of the House, the government should: (a) recognize that cancellations of medical appointments and mandatory tests, denials of treatment, and threatening of individuals following treatment for chronic cerebrospinal venous insufficiency (CCSVI) is continuing; (b) work with the provinces and territories and all relevant stakeholders to bridge the polarization that exists between various factions of the medical community regarding CCSVI; (c) work with the provinces and territories and all relevant stakeholders to prevent those treated for CCSVI from being denied follow-up care; and (d) work with the provinces and territories to define appropriate follow-up care for CCSVI through consultation with physicians and other health care professionals who have been or who are actively engaged in treating CCSVI.

 

 

M-363 — May 2, 2012 — Ms. Duncan (Etobicoke North) — That, in the opinion of the House, the government should, with respect to clinical trials for chronic cerebrospinal venous insufficiency (CCSVI): (a) publish the names, credentials, and declarations of conflicts of interest of the Canadian Institutes for Health Research-appointed international review board; (b) publish the criteria used to select the winning bid; (c) publish the estimated timelines for the clinical trial(s) and sources of funding; (d) ensure that the winning bid takes into consideration the key design elements of existing FDA-approved trials on CCSVI; (e) ensure that those undertaking diagnosis and treatment are properly trained and experienced in treating CCSVI; (f) ensure clinical outcome measures, primary, secondary, and tertiary therapeutic end points, and safety measures are specified; and (g) determine whether there will be a formal independent Data Safety Review Board.

M-364 — May 2, 2012 — Ms. Duncan (Etobicoke North) — That, in the opinion of the House, the government should develop, in collaboration with provinces and territories, a research agenda focused on the care of those living with multiple sclerosis (MS) including: (a) the establishment of goals of care for people with MS; (b) consultation with Canadians living with MS to determine how they can be better served by the Canadian health care system, what challenges they have faced in dealing with it, and how these can be best overcome; (c) a determination of the current medical understanding of the natural history of MS from the perspective of people living with MS; (d) the establishment of working groups of medical doctors, scientists, and persons with MS to provide a detailed description of what it is like to be a person with MS, the range of symptoms requiring medical intervention, how their disease might have been better diagnosed, the need for more timely treatment, and whether the right research questions are being asked about MS; (e) a determination of how best to provide patient-centered evidenced-based options for care that target improved quality of life and reduced progression of disease; and (f) a determination of what epidemiological studies and family history monitoring will be necessary to ensure the earliest possible diagnosis of MS.

M-365 — May 2, 2012 — Ms. Duncan (Etobicoke North) — That, in the opinion of the House, the government should organize an interdisciplinary conference (e.g. general practitioners, interventional radiologists, neurologists, nutritionists, osteopaths, physiotherapists, speech therapists, people with multiple sclerosis (MS), etc.) focused on: (a) developing patient-centred care for MS; (b) bridging the gaps so no one falls through the cracks; (c) improving quality of life; (d) better learning the patient’s experience with the disease; (e) better supporting their needs; (f) developing methods that measure improvements in quality of life; and (g) providing educational materials of new science for medical students, healthcare professionals, and people with MS.